Steven Spohn is a writer and also the COO and outreach director at AbleGamers, a charitable organization dedicated to helping disabled people improve their lives through gaming. Steve wanted to write something about an upcoming film based on a novel, Me Before You by Jojo Moyes, and he asked if it would be a good fit here. And I think it’s important to have his voice heard with things like this. So, here’s Steven! (Oh, and don’t forget to read another post of his here — “Your Last Good Day.”)

* * *

An Open Letter to Jojo Moyes and Aspiring Writers —

As a child, I never really got to “see myself” on-screen in the same way that other children did in Superman, Batman or Xena.

Sure. I could watch Keanu Reeves as Neo, indulge the fantasy, dive into the escapism and picture myself as The Chosen One. After all, no one can fly or dodge bullets like Mr. Anderson, so the fact that I couldn’t walk like he does wasn’t exactly a stretch of my imagination.

Historically, Hollywood releases a movie with a profoundly disabled character once every few years. And although the frequency has been increasing as disability becomes more accepted in the mainstream, main characters with severe disabilities are extremely rare and (in my experience) never seen in romances.

In fact, the lack of main characters in books or TV with severe physical disabilities confining them to a wheelchair are so rare that if I had a quarter for every time someone asked me if my favorite fictional character was Professor Charles Xavier, I could literally buy you a Ferrari.

So, you can probably imagine when I first saw the trailer for Me Before You, a movie depicting a quadriplegic man romancing a young female caretaker and sharing some of the same thoughts most of us with severe disabilities have, I would’ve been excited. “Finally! A romance about a quadriplegic man and an able-bodied woman.”

The female lead Louisa is hired to take care of Will, which unbeknownst to her is a type of suicide watch. When she finds out he plans to go to Dignitas — a place in Switzerland that helps people commit assisted suicide, she’s distraught. Eventually Lou comes around and decides she will do her best to change his mind during the remainder of the six-month window Will promised his parents he would use to consider his choice. In the end, despite falling in love with each other and Louisa begging Will not to go, he decides to stick to his decision and end his life.

“I don’t want you to be tied to me, to my hospital appointments, to the restrictions on my life. I don’t want you to miss out on all the things someone else could give you. And, selfishly, I don’t want you to look at me one day and feel even the tiniest bit of regret or pity that — … You have no idea how this would play out. You have no idea how you’re going to feel even six months from now. And I don’t want to look at you every day, to see you naked, to watch you wandering around the annex in your crazy dresses and not… not be able to do what I want with you. Oh, Clark, if you had any idea what I want to do to you right now. And I… I can’t live with that knowledge. I can’t. It’s not who I am. I can’t be the kind of man who just… accepts.” (pp. 325-326)

Men and women who are severely disabled fight demons that speak the words above almost every day. There is not a man or woman who is quadriplegic or near the quadriplegic stage of a progressive disease who has not worried about being a burden to their loved ones or if being in a relationship is fair. Those questions are in the back of our minds every moment of every day.

‘Me Before You’ was an opportunity to create a commercially successful, Nicholas-Sparks-level, true genre-defining romantic movie starring someone who is severely physically handicapped conquering his demons, winning the girl and riding off into the sunset like we see in so many other Hollywood romances.

If those types of books and movies were more common, this movie wouldn’t even be controversial because it would just be one movie of dozens. Unfortunately, there are very few scripts written about severely physically disabled people, let alone in romance.

Moyes could have tackled society’s view of people with disabilities and sexuality. In the view of many people, just being disabled, in and of itself, takes sexuality away from being human. Instead, this story perpetuates the stereotype of sexually neutral disabled people by painting the picture of a sexually attractive quadriplegic man and then neutering him.

(The most sexually intense scene between Lou and Will is a few kisses.)

Instead we get a tragedy. We get thousands upon thousands of people with disabilities who will finally see a character like themselves on the big screen in a real Hollywood blockbuster who chooses to end his own life because being disabled is too hard.

Even though Will gets the girl, has ridiculous amounts of money, power, oh and A CASTLE, he can’t imagine living life with a ridiculously higher quality of life than most people with disabilities will ever be afforded.

So, if the movie isn’t about them getting it on or Will’s triumph over adversity, what is the point of the movie?

Will is a plot device.

The book was never about Will. The story is about Lou and how Will’s influence changes her life. Lou fails to show Will the joy that can still be had in the world, even if you find love, because you are dealing with some sort of disability.

“Not quadriplegics. The thing that really informed it was a member of my family who suffers from a progressive disease. I have been involved in feeding her, taking her out, and that kind of thing.”

While it’s disturbing she did not conduct any interviews with people who are actually quadriplegic, Moyes has a deaf son. She’s personally seen the attitudes some people can exhibit around her son calling the negativity “frustrating” in the same interview. She knows what it’s like to have people presume things about you or your loved one without actually knowing them.

Supporters of this book hope it will help open a dialogue on the subject of assisted suicide. But what a lot of able-bodied supporters don’t understand is when you are living life as a quadriplegic person, you’re dealing with the dark themes presented in the book and movie every day.

I’ve had perfect strangers walk up to me and ask if “my dick works.” I’ve had the heart-wrenching conversation with lovers explaining the restrictions on my life and how those restrictions would affect them. I’ve had people literally say to me “I’m not as strong as you. If I was in your position I would’ve killed myself.”

In real-life, the girl doesn’t always get the boy, sometimes people decide to commit suicide, and love doesn’t conquer all.

“Me Before You touches on poignant themes about what it is like to both live with a spinal cord injury and care for someone as a family member and caregiver.

However, while Jojo Moyes’ book is defined as fiction, the character of Will Traynor is very real to 5.6 million Americans living with paralysis. At the Reeve Foundation, our mission includes enhancing quality of life, independence and health for all individuals living with paralysis.

The Reeve Foundation does not believe disability is synonymous with hopelessness or that living with a spinal cord injury is considered a fate worse than death.

“Disability does not sideline or disqualify someone from living a full and active life. Everyone living with paralysis can live boldly.”

After the former man of steel himself, Christopher Reeve, was in an accident leaving him completely quadriplegic, his wife Dana wrote how to be a wife, not a caretaker. That yes, there are some parts of someone’s care that can be challenging, but ultimately, you’re still human. A woman and a man in love, lust.

You see, for people like me, Christopher Reeves, and millions of other people who have quadriplegic conditions, this isn’t just a movie. This is people seeing a misrepresentation of what it’s like to be quadriplegic. It’s like if Hollywood took your life and focused on the darkest hours, ignoring all the triumphs, and only noted the worst-case scenario.

There are so many “meet cute” heartfelt, endearing, hilarious, sweet and tear-jerking parts of being in a relationship with someone who has a disability that you will probably never get to see on the big screen.

You probably won’t get to see a character working out like Rocky to be able to stand for just a moment on his wedding day like my friend, Marco, did. You probably won’t get to see a character smacking her boob off furniture trying to get into sexual positions more convoluted than the Kama Sutra like my girlfriends have done. You probably won’t get to see anything like most of the perfect romance or rom-com stories I know because getting Hollywood to back these kinds of plots in books or movies is difficult, and the one time they did it was written by an author who didn’t even bother to interview quadriplegic people.

The reason we’re seeing so much of an outcry from the disability community is that people with disabilities are often pigeonholed into inspiring others to “live boldly.” A quadriplegic man “sacrificing himself” so that his love can live “a better life” isn’t a heartwarming sacrificial moment, it’s a heartbreaking confirmation of our worst fears. Because our culture is so heavily rooted in Hollywood, young quadriplegic people could see this movie where the “hero” commits assisted suicide as confirmation that the demons in their head might be right. Maybe life isn’t worth living. Maybe the burden is too great.

So, I’m here to ask you, aspiring writer, please don’t make the same mistakes. If you’re going to write about a minority or disability, do the same level of research you would do about a foreign land or a subject you have never personally experienced. Realize that you could accidentally be playing into the fears of a group you’re trying to support.

Please remember that people with disabilities are not plot devices.

To those who are not writers: Please don’t approach random people in wheelchairs and ask if their private parts work.

(Edited to add: best to not approach any stranger to ask them anything about their privates. — c.)

I hated this book. JoJo Moyes and her book, Me Before You, gets all this adulation and yet the story made no sense at all beyond cheap shock value. The story line of Me Before You cheapened what love really means and “is” on so many levels; I was so upset after I read this book. I appreciate you speaking out on this. Blessings.

Thank you so much for writing this post, Steve. And at the same time, I’m sorry you had to write it. I don’t know which emotion I should feel stronger – despair or anger – but I DO know that I will NOT be watching that film or buying the novel that inspired it. I had such high hopes when I started seeing posters for it, but clearly it just regurgitates ridiculous and ignorant beliefs in the guise of ‘romance.’ How did this not get flagged at some stage – at ANY stage in its inception?

I believe it’s because the book is a solid YA romance at heart. The sacrificial ending is a bit much, but up until then it follows the same path as many romance plots before it. In any case, thank you for your support.

“Tracy, every single person in a medically dependent situation has considered suicide, if even for a brief second. The thought wanders through your mind “is this all really worth it?” and the answer is absolutely yes.”

Really? Every single person? Did you research this?
Once again, a disabled person with an opinion and a place to share it feels entitled to speak for the entire disabled population (please stop calling us a community). Sharing your thoughts on this movie is one thing — stating something like this as a fact is another. While we may both have a disability, YOU DO NOT SPEAK FOR ME. I’ve never “considered suicide, if even for a brief second.” You’re basically telling people that I have, without even speaking to me first. Don’t do that.

Thanks for your comment. I stand by my words; everyone in an extremely difficult, medical situation has had moments of doubt, wondering whether going on is worth it. For some, it’s a thought that darts quickly. through your mind in a very dark hour, for others it’s an everyday struggle. You seem angry, tho. On a much deeper level than one post. If people sharing their thoughts and experiences bothers you, maybe there’s a reason. The disability community is a very welcoming place. Might I suggest finding some support groups to work out some of those feelings. Facebook is a great place to start.

I know I should be polite here as a fellow writer, but the excerpt from that book turned my stomach. What a disgusting pile of crap to foist onto people who absolutely deserve to see themselves as their own heroes, as we all do.

Like a disability means you have a social and relational responsibility to sacrifice yourself like a christ figure for the sake of “more valuable” members of society, whose happiness is more important than your own? There’s raising awareness of a disability, but I don’t think this book is raising awareness of anything. It’s raising attention, and lowering consciousness. “Me Before You” obviously refers to the author, not any of the characters.

I tried very hard in my writing not to attack Jojo directly. I have a few pictures of Tweets we exchanged and whatnot, but in the end I decided to address the underlying problems. I hope that aspiring writers will take these words to heart and do better when writing minorities.

One of the few times I’ve seen someone with a major disability given a romantic plot line was in Orson Scott Card’s Homecoming series. Yes, I know he’s not the best advocate to mention in SFF circles with his homophobic sentiments. However…

The character of Issib was inspired by his son who had cerebral palsy. There’s a scene where Issib and the woman he’s having an arranged marriage with meet in a tent and she asks him what he’s capable of doing – in terms of romance and sex. He’s a side character, so he didn’t get as much page time as I’d have like to see, but the portrayal is fantastic.

are you seriously tone-policing me and calling me angry (on a deep level) because I said I have never wanted to kill myself? I lost my ability to walk, not my will to live. I actually really like reading about other people’s thoughts and experiences. I don’t like being spoken for. And I really don’t like being told that yes I have wanted to die when I just plainly told you that isn’t the case. Your arrogance is too much, dude.

When someone comes out as a spokesperson for people with disability, you do NOT expect them to make condescending comments to another person with a disability. “You’re lying about your experience and sick in the head, but we’ll fix it for you.”
Unlike Stephen, I’m not psychic, so I can’t say if he meant to come off that way or if he truly spoke in the spirit of helping another person. But… there it is. At least I got my allotment of daily irony, bitter as that may have been. Yeesh.

I’m not policing you, but I am being defensive. When your opening comment is an attack (i.e Really? Every single person? Did you research this?
Once again, a disabled person with an opinion and a place to share it feels entitled to speak for the entire disabled population (please stop calling us a community) you’re seeing my shields go up. Verbiage like “once again” “feels entitled” and using all caps is definitely hostile and angry. But rather than ignore you, or anyone who criticizes something I say, I like to open the communication channels and try to get some discourse going.

When speaking to Tracy, I wanted to reassure her that her child thinking about suicide is not uncommon and that it’s okay. I personally believe that everyone, able-bodied and disabled alike, has had dark and depressing hours, times where you wanted to give up.

It’s hard to describe in a limited commentary area, but there is a difference between “wanting to kill yourself” (as you put it) and wondering if it’s all worth it. For injured veterans, some of them wonder why they made it when their buddies didn’t. For someone with a progressive disease, it’s wondering how bad the future will get. For someone with a sudden injury that takes away their abilities, it might be wondering if their quality of life will be enough to continue on. For you, I have no idea what your darkest hour was. Maybe you never had one. Maybe you’ve always been happy.

The subject of assisted suicide and suicide in general is sticky and complicated and nuanced. Hell, not everyone in the disability community agrees with my stance. Some think that he was right and that life isn’t worth living if you can’t go ravage someone the way you would like to.

I’m not psychic. I don’t know why you are going hostile against me. I don’t know why you don’t like thinking of the disability community as a community. All I know is that your comments are aggressive. I’m sorry if you see anything I’ve said as condescension or arrogance. In this case, I probably should’ve just let you say your piece and move on, but that’s not who I am. I like to attempt finding resolutions and common ground wherever possible.

I’ll take it as a refresher on the old “do your research” rule. Goes double when you’re taking on a subject like this. When you’re writing about marginalized people, you’re taking on a responsibility. Own it, or don’t do it at all. The book sounds exploitative as hell, but I can’t say for sure because I haven’t read it. I plan to continue never reading it, because it also sounds soul-killing. I’m willing to take soul-kill for the prize of enlightenment, but it also doesn’t sound very enlightening. Why would it be? The author admittedly never did her research.

I’ll also take it as a lesson not to ask people about their junk, not that I needed one. No adult should need that lesson, but apparently some do. Today, I learned about a whole ‘nother level of disrespectful. Chrissakes.

Very thought provoking piece here, and good on you for writing it. Also good on you for living your life in a positive way (something people from all walks* of life can struggle with).

*not trolling

I probably have room on my fictional space pirate ship for a bad-ass disabled person. Time to let one of my POV characters have a slowly developing condition…

In seriousness, I did think more about suicide while reading your piece (and the comments). Even though none of this is likely to be news to anyone, I feel it’s important to note:

– just because someone is in an enviable position (rich disabled dude with a loving partner) doesn’t make their feelings of depression / desire-to-end-it-all any less legit. People who have everything can still get depressed. The struggle is real; they probably can’t just “cheer up.” That said, please stick it out guys, we love you (thinking of my best friend here).

– some folks get upset about even the idea of suicide. I can only speculate: it might be because of an expectation that they should have considered it, when they haven’t… (which would get annoying to say the least! Sorry if this is you.) Or maybe it’s because of a social / religious stigma around suicide. Whatever the reason, those feelings are real too, and we’re all dealing with our lives in different ways. Hurray for subjective everything.

I haven’t written a disabled character yet (except for a couple of blind people because I researched that area), but I have seen a few more movies with main characters in wheelchairs that are NOT Hollywood.
So paraplagic only for Italy: Cuore Cattivo (http://www.imdb.com/title/tt0112756/?ref_=fn_al_tt_1) and Perdiamoci di vista (http://www.imdb.com/title/tt0110808/?ref_=fn_al_tt_1) – in both cases it’s a girl on a wheelchair, not a love story, one is drama, the other comedy. Being both from the mid.90s, you can guess it might have been an issue at the time in Italy! 😉
Tetraplegic: I have enjoyed the French movie Intouchables (http://www.imdb.com/title/tt1675434/?ref_=nv_sr_1) and the Bollywood movie Guzaarish (http://www.imdb.com/title/tt1438298/?ref_=nv_sr_1) – apparently both are based on true stories.
If I ever write a sci-fi story (I don’t see that in fantasy much) with a disabled person, I’ll make sure to have one beta-read the story, just in case!
And Chuck’s edit is spot on – I also get asked weird questions by people, so… I guess none of us is a plot device, disabled or not…

[…] I Am Not Your Plot Device – I haven’t seen or read Me Before You, and I don’t plan do (mostly for the reasons explained by the author of this post). It’s not about death with dignity/assisted suicide (which I have my separate opinions on), it’s about representation. Like Steven Spohn says, “If those types of books and movies were more common, this movie wouldn’t even be controversial because it would just be one movie of dozens.” […]

A fascinating perspective. thank you for writing and sharing this. my own feelings about this popular book, is that it came out well after what I thought was a beautiful/realistic movie about a similar topic, a movie that I loved. So Moyes’ book felt totally unrealistic and wrong by comparison! Wondering if you’ve seen it? http://www.imdb.com/title/tt1675434/

[…] This. To all writers, THIS. First, empathy in the specific. This essay by Steven Spohn isn’t about lesbians, it’s about a group of people even more marginalized in every form of entertainment culture. Empathy. […]

[…] But not, however, unremarked upon by viewers – many of whom could not help shouting with joy at this unexpected and unfortunately rare sighting, of someone with a disability just getting on with their day. Representation matters. We all need to see accurate and fair portrayals of ourselves in fiction, but all too commonly a character with an impairment is used as a piece of inspiration porn, or to send the message that having a disability is awful and burdensome. […]